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I was 12 years free

Hi everyone. I was diagnosed with MS when I was 17, the day before my 18th birthday. I’ve completely let it rule my life previously and missed out on so much, which is fairly stupid (I now realise) at 29 as it had never returned.

My first symptom was that my right arm had done numb, no weakness or anything it was just sensory. The neurologist put coins in my hand and asked me to tell her what they were by their shape - and I couldn’t. It only lasted about three weeks. I had an MRI and lumbar puncture which confirmed it for me. As soon as I got the diagnosis my younger self just went into a complete state of depression. After a year or so I managed to put it to the back of my mind and ignored it, and moved on with my life.

I’ve had several niggles since, not lasting more than a few days so never went back to a doctor. I was signed off from my neurologist when I was 18 and have never been chased up or anything so haven’t seen anyone for over a decade.

I wish I had been put on a treatment, or at least been able to speak to someone about it as I feel like I’ve been forgotten :frowning: I now have a fantastic six year old daughter and my partner and I have been discussing another baby. I feel scared because I know kids are a no no when you’re taking mediation.

My question is, I had my bloods taken over a month ago and was told my iron was low so I started taking iron supplements. The first week I did start feeling better, but after three or four weeks taking them I really think they have triggered something.

My right leg went numb and hot. Then it has gone weak, and now my left leg is slightly numb. I have never had this before and I’m hoping the iron won’t have caused anything, is this likely?

I daren’t go to the doctor, I don’t want my daughter or partner to worry. I just don’t know what to do.

I know this message is all over the place, I just didn’t even know where to start when I joined this forum.

Thanks for reading, and help would be appreciated.

Hello

Welcome to the forum. In many ways, I’m sure you’ve managed to spend the last decade feeling pretty much MS free, which you could take as a bonus. Being on a disease modifying drug (DMD) wouldn’t have altered the fact that you’ve not had any big relapses, so you’ve not missed out up to now.

You are right that most DMDs rule out pregnancy (or vice versa). The only one that isn’t ruled out by pregnancy is Copaxone. But you’d need to speak to a neurologist to discuss that further.

In fact it would probably be a good idea to see your GP and ask for a referral to a neurologist. Are you still living in the same area as when your were diagnosed? If not, you may need to approach the hospital where you had tests and the diagnosis for some copies of results. You may be able to get a CD of your initial MRI, and perhaps some kind of history for the new neurologist. (You might be able to get some information from your GP as well.) Unless of course it is the same hospital in which case they should be able to access the old data.

I don’t think that taking iron tablets could have caused quiescent MS to become active. But obviously I’m not a doctor, so what do I know?

I know you’ve said you don’t want your family to worry, but having what seems like it could be an MS relapse surely they’ve noticed that something’s not quite right? Sometimes we may not want to worry our family, but ultimately have no choice. That’s the trouble with MS, it sticks it’s ugly mug up and interferes with your life like it or not.

Sue

Agree with what’s been said. I think I’m right that DMD’s are only prescribed for m.s. when there are noticeable relapses followed by a remission. As your m.s. looks to have been dormant you wouldn’t have got DMD’s even if you had asked for them.

It may be a good time to get a referral to a neurologist and the issue of DMD’s can be discussed.

You and your partner have a difficult decision whether or not to try for another baby soon because it ain’t a good idea to get pregnant whilst on most DMD’s.

As for worrying your partner - what would worry me in his position would be the fact that my partner was not sharing her concerns with me.

As for your 6 years old - don’t discuss things with her - she’s far too young!

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